Addressing Social Isolation

Zimbabwean Stone Sculpture at Zim Art

Early on when I was asked about my ABI (Acquired Brain Injury) a common observation was “It must be frustrating.” My response at that time was, “I’m glad my injury wasn’t worse.” I felt blessed for each activity I could do, even if it was at a significantly reduced level.

That was then. Now almost four years into living with ABI I must admit there are definite frustrations. The frustration of bumping up against my limitations happens more often than I would like. As a result I regularly need to curtail activities leaving me with a growing sense of isolation.

Pre-event Planning

(One could also call it ‘prevention’ planning.) When I’m anticipating a significant event I try to ramp down my normal activities for a day or so before hand. That is an attempt lower my sensory loading and build up some resilience through having additional reserves. The lower my sensory loading is before an event the better I can fare during a social event.

What interferes with my plan of reducing my sensory loading ahead of an event are the external stressors that life sends my way from time to time. These stressors interfere with my attempts to reduce my sensory loading. This most recently included two and a half hours of  dental prep work for a triple crown procedure.

Event attendance

During a social event I make a point of being mindful of my level of sensory loading. I make a point of taking a break at regular intervals or as needed by going for a 15 or 20 minute walk. Finding a place, preferably outdoors, away from the crowds, noise or activity.

The more crowded the venue and the noisier the venue the more frequently I need to take a ‘time out’. I seek out one-on-one conversations rather than joining in on larger group conversations as a way to conserve my energy. Engaging in group conversations has an exponential affect on my cognitive abilities, putting me at greater risk of neural fatigue.

Once I reach my limit on neural fatigue I can no longer function in a social setting. My only option at that point is to head home. If I’ve let my neural fatigue advance too far I need to request a ride home. (Kind of like needing a designated driver when one’s alcohol level gets too high.)

Post event

After a social event I need time to recover. The more significant the event the more time I allow myself for recovery. It isn’t always easy to gauge the amount of time needed for recovery.

Recently I attended a outdoor community event. I choose not to buy tickets to enter the venue even though several other family members were attending. I did not expect my endurance to be long enough to warrant buying a $30 ticket. I took in the event from outside the perimeter fence. That allowed me time to engage with a few people while listening to the music. Within a half hour or 45 minutes I realized I needed to leave. The music was too loud and the percussive quality of the base was affecting my body. Developing a headache very early on was a key indicator that I needed to clear out.

The next morning I felt fine. I figured the good night of sleep had given me the necessary recovery. I decided to attend our local church service. Within ten minutes of entering the church I was overwhelmed. It became rather obvious that I was far from having recovered from the brief attendance that the previous day’s community event.

More recently I had attended a wedding reception for a nephew. I had been very mindful and took regular ‘time out’s’ during the reception. I was able to take 20 minute walks along a road that followed the shoreline of the bay. After several ‘time out’s’ I developed a headache. Once again I realized it was time to clear out.

Coming away from this more recent event my body was giving me several signals that pointed towards needing a longer recovery time. The signals included:

• a headache – low grade but a clear signal that I knew I should not ignore
• neural fatigue – having difficulty initiating conversation or responding to others
• physical fatigue – difficulty with muscle coordination affecting my gait when I walk and unable to carry heavier objects that I otherwise have no difficulty with. Muscle pain in area that normally are not an issue
• unable to sleep – feeling exhausted yet unable to sleep. Two hours of lying awake before getting some sleep.
• unable to wake up properly – Getting out of bed in the morning but not feeling awake.

Due to the need for more recovery time with my most recent event, I decided it best to cancel my plan to attend a family member’s art exhibition. As much as I was looking forward to the art exhibit, I knew it was senseless to try to attend. The drive up and back would be an issue. To go to the event and bow out after ten minutes, as happened the previous week, would make the trip utterly senseless.

Social isolation

The ongoing challenges with ABI as it pertains to attending events is becoming a noticeable source of frustration. I’m experiencing a growing sense of isolation. I feel like I am missing out on things during an event or by declining invitations for other events.

There are various factors which contribute to the sense of isolation:

• Shortening my stay at a social gathering.
• Interrupting my participation by giving myself a ‘time out’.
• Missing key bit of conversation as neural fatigue sets in.
• Cancelling my attendance at planned events

Modifying Expectations

I am regularly reminded that I can not live with the same expectations that I had pre-ABI. The challenges I experience in various social settings will likely not change much. I should not let the sense of social isolation define my life. I’ve been advised to look internally for affirmation. Reflecting on what I am able to do and down playing the setbacks.

One of my goals is to find and accept a level of social engagement that is satisfying. I expect it will take time and trying different experiences to begin to understand what that might look like.

Meanwhile I continue to keep in mind the idea of ‘cost – benefit’. It’s okay to put myself into a situation that requires some recovery time. Rather than focus on the event I end up cancelling while recovering, I focus on the memories of the recent event. By consider the ‘cost – benefit’ of an event before and during I try to avoid a recovery time that leaves me discouraged and short of good memories.

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Imagine Living on Sacred Land

Had the opportunity for a scenic hike recently. The trail was near an aboriginal sacred site. The trail head had a sign that reminded hikers that Eagle’s Nest is an Algonquin sacred site. To preserve the integrity of the area and the environment hikers were asked to take only pictures and leave only footprints.

Hiking in the early spring means seeing many early spring flowers. They are visible because the undergrowth has not filled in the way it does later in the summer. What was also visible was garbage along the trail. By the time I had covered the 1.5 km I had collected three dollars worth of empty beverage container.

When the cans and bottles were tossed into the bush they might have been out of sight. But early spring, after the snow has melted all is revealed.

 

 

One of a dozen stranded inukshuks

The short hike included an interesting side excursion. Some one or more likely several people over the years had decided to leave their mark. Out in the tundra these could have been life-saving direction markers. Here it was interesting to see the different creations made by earlier hikers.

 

 

 

 

The summit was truly worth the hike. At only 1.5 km I would have gladly hiked 15 km given the view that met our eyes. Not a cell tower on the horizon. Not a single hydro tower. No guard rails. No reminder signs to stay back from the edge. No motorized noises. Simply the wind sighing through the trees.

On a warm day one could sit here and enjoy the sounds of nature and the panoramic view for hours.

 

 

The hike back was downhill and went very quickly. We were back at the car before we realized it.

Unfortunately the dog walkers seem to not understand what it means to …leave just foot prints.  They could have taken their dog off the trail a few paces and buried the business when their pet had relieved themselves. It’s possible that many dog owners were doing that. There was clear evidence that there are plenty of dog walkers that thought ‘poop ‘n scoop’ was the responsible way to conduct themselves. That would be fine except for the fact that their trail etiquette left something to be desire.

Actually they left something others did not desire. All I could think of is, “Your mother is not here to pick up after you.” Not sure who they thought would clean up.

I don’t think extra signage would have made a difference. City parks have a clean up crew, the wilderness does not.

Take only pictures, leave only footprints.

Eagle’s Nest Sacred Site signage:

In HONOUR of ALL People, past, present and future, and ALL that Exists: please see that Eagle’s Nest Sacred Site remains forever a True Place of PEACE.  Thank you! Miigwetch!

The sign at the Sacred Site gives some explicit instructions:

PLEASE: Listen to your HEART and RESPECT the NATURE of this site. No garbage or bottles – All you bring in, please bring out. Signed: Tchi Miigwetch Kichi Manitou, Mother Earth and ALL Relations Everywhere.

 

It’s not just wilderness areas. All land should be regarded as sacred. All land should be used in a manner that promotes peace and friendship.

We need to treat all land as sacred ground. How would that change the way we use the land? Finding beneficial uses without exploiting the land. Caring for it so it will benefit future generations. Using land in a way the promotes peace and harmony.

What do you do with the land you live on? How do you use the land to affirm that it is sacred land?

 

 

 

Acclimatizing to a new Reality

Handrail for safety

It’s been over three and a half years since I’ve entered the world of ABI (Acquire Brain Injury). I haven’t written in a while due to trying to adjust to the shift in my reality. I’m coming to terms with the realization that there are aspects of my injury that are not likely improve.

In the months immediately following my injury, there was a level of hope and anticipation that came from learning about the injury and seeing improvements albeit very gradual. It was mainly in looking back that I could recognize certain improvements.

The hard part is the transition from seeing hindsight improvements to coming to terms with various areas in which further improvements are not likely to happen.

Accommodation routines

I’ve gradually developed routines that helps me mitigate symptoms that would otherwise push me into the area of neural fatigue and sensory overload. Key is having things carefully planned out. The planning is more specifically focused on anticipating unexpected changes in plans or expectations.

I have a recent example of having carefully planned out a project. I had wanted to build a handrail for my daughter so that their front entrance would be accessible to seniors and others with mobility challenges.

The Project

I had taken measurements and created a list of materials and tools I would need for the job. Since it was a simple project I could reasonably expect to complete it in a half day. For good measure I gave myself a full day to do it. I could make that fit into a weekend visit involving a 4 or 5 hour one way trip.

A last minute change in design meant that I had to run to the hardware store and buy three ground spikes or as one retailer calls them, “Big Mike” spikes. It required a visit to two different stores in two different towns to find a store that had enough of them in stock. Fortunately the staff at both stores were very helpful. Had I been left to fend for myself the project would have gone off the rails before I even started.

I arrived from the store with the necessary supplies. All went well till I tried pounding the middle spike into the ground. Turns out there were the remnants of an old sidewalk that made it impossible. That required some rethinking. I needed to find a different way to secure the middle 4X4 cedar post.

You might think. That’s not too difficult. Pre-ABI I would have thought nothing of making the change. The logical solution was to attach the 4X4  into the side of the steps. So simple. Nothing complicated. Go back to the store and buy a Tapcon, get the drill and in a couple minutes the post is in place.

For me it just about meant being unable to complete the job. Mental flexibility continues to be a challenge. The process of thinking of an alternate way of securing the 4X4 post meant the original plan which I had carefully thought through had to be changed.

Making the change meant I needed to go through a cognitive process that zapped much of the energy out of me. Rethinking the project and trying to make adjustments on the fly created noticeable neural fatigue.

Time and again when I go through a rethinking process I’m reminded how many cognitive steps are involved. When one’s brain works efficiently, one if able to make the changes on the fly and not even realize all the mental changes that had to be made. With injury in one part of  my brain, another area of the brain takes over. It can do the job but seriously lacks working efficiency.

Had I had a couple days to complete the project, the best plan of action would have been to stop construction for the day, take some time to understand the change in design and finish the project a couple days later. No neural fatigue. Minimal chance of making errors.

However, since I had only given myself one day at the most, I continued the project. I slowed done since neural fatigue drains energy from the whole body. I found myself humming, tuneless humming, which is a further reminder that I am not in a good space.

A simple job done

Consequences

I was pleased to have the job completed by supper time. Even though I was totally worn out, I was feeling pretty good. The ‘Cost / Benefit’ factor was such that I was in a very good space. I had achieved my goal. I knew that completing the project with the side effect of neural fatigue would come at personal expense.

I hoped that a quiet evening and a night of sleep would put me back on a good track. Even though I had my doubts the next morning I pushed ahead. I realized after the first couple of hours that I needed more recuperation time. Engaging in simple conversation was just not working. Focusing on what was happening around me just wasn’t working.

My best option was to take some personal time. I went for a walk. The minimal physical exertion helped my body to gradually shed the neural fatigue. The repetitive motion of walking and the minimal cognitive demands made it an effective choice. Walking by myself meant there were no social demands, no expectations to engage in conversation or respond to someone else expectations. By mid afternoon I was ready to visit, drive or participate in activities with other people.

Expectations

Time and again I’m reminded to have a contingency plan in case things don’t work out as expected. If I have time on my side, I can make it work without putting myself into a lengthy recuperation phase. It’s either make more time to complete a project or else take more time to recuperate.

Sounds simple in hindsight. As they say, “Hindsight is 20/20 vision.”

Sounds Puzzling

Puzzling rings

It’s not often that a pleasant surprise surfaces. Especially when it defies my usual ABI (acquired brain injury) response. Sunday’s are usually my most challenging day of the week. As a result I have learned to be mindful of how my body responds to the different parts of my routine.

I ramp up my mindfulness once I enter my church. Being mindful includes monitoring how my body is responding; the cognitive demands, the emotional loading and the acoustics of the space. I typically  make it through a couple of songs. Occasionally I am pleased to make it part way into a third song. However, pushing it beyond the second song often results in my needing more recovery time, meaning I miss most of the rest of the worship time.

A Pleasant Surprise

I recently attended a worship service out of town that included a praise band with a full contingent of musical instruments; two guitars, a violin, a bass, a drum set and two vocalists.

While I was looking for a place to sit that would allow me to exit inconspicuously I had a growing awareness of the praise band. It wasn’t the particular song even though it was a familiar tune. It wasn’t the volume even though they were not holding back. I became keenly aware that the sound waves weren’t bombarding me. It wasn’t pushing me into a guarded stance. Instead, the music was gently embracing me, allowing the melody wash over me. My body remained relaxed. The music was slowly drawing me in.

For how long?

As much as I was enjoying the surprising experience, I couldn’t help being somewhat wary. It seemed wonderful to be embraced at the outset. My mindfulness was heightened because I didn’t want to be taken. I was wary of being entrapped by the gentle embrace only to find out it was trouble in disguise.

As the fourth song was belted out with full musical accompaniment I still sensed no hint of betrayal. By the sixth song I was willing to concede that there would be no betrayal.

Design

I did not crash. How was it possible? If it was the acoustics I have to give credit to the architects who designed the worship space. The acoustics were working for me rather than creating dissonance in my body. I wondered whether the lack of reverberation was enough to prevent the scale from tipping into the negative zone. It felt like the hard edges of the sound was being absorbed as the music traveled outward. It was wonderful to feel embraced rather than attacked.

Every enclosed space is designed to deal with sound vibrations and resonance differently. There are the sound vibrations that a person can hear and there are those that are outside of a person’s range of hearing. There are sounds which the ear picks up and there are sounds which the body absorbs. What is outside a person’s range of hearing, I believe, can still affect a person. Having noticed a different quality to the sound as soon as I entered the sanctuary, makes me think that the sound vibrations outside of my range hearing have a subtle but profound and cumulative affect on me.

Back home

It’s two weeks later and I was barely one song into the worship service in my home church when I realized I was approaching the limit of my tolerance. My eyes were starting to tear up and I found myself humming (not the music that was playing). I walked out and gave myself twenty minutes in a quiet place and then ten minutes walking outdoors.

I returned to the worship area but left 15 minutes later as I was still struggling. By this time extreme fatigue washed over me. I had no energy to visit with anyone in the fellowship hall following the worship service. I went and sat in the car waiting for a ride home.

A two kilometer hike in the afternoon did not improve my condition. Not till mid evening did the neural fatigue finally clear.

Detective work in action

How could two different soundscapes have such drastically different effects on me? That’s one mystery that begs an answer.

Two weeks ago I had a successful experience. It was an unexpected surprise because of several factors:

• I was in an unfamiliar place (cognitive loading)
• I had attended a major social event the night before (emotional loading)
• I had traveled several hours by car the day before (PTS symptomology)
• I was away from home over night (loss of routine)

I had hoped my most recent experience in my home church would show a slight improvement given my recent success. There are several factors that should have helped make it a positive experience:

• I had an uneventful day the day before (no residual sensory loading)
• I hadn’t traveled (no lingering PTS symptomology)
• I was in a familiar place (anticipated routines)

There are factors that are not as apparent. For example being in a familiar place, I know the back story of many of the people – their joys and losses. Two areas of emotional sensitivity that has a way of ramping up my sensory loading.

Increased complexity

Uncovering the reasons for the contrast between the two experiences requires considering various factors. To name a few:

• My emotional loading of the previous couple days
• The cognitive demands of the previous day or two
• How well I’ve slept
• What stress factors I’m dealing with (stress being one of my key triggers)
• How recently I’ve had a ‘red zone’ experience

Wrap up

There is one thing that I have come to expect. There is invariably a level of unpredictability to how most active environments will affect me. I can manage an activity or an environment successfully several times and then the next time find myself crash.

I can prepare myself for a significant event. That means relaxing and making a point of not pushing the boundaries of what I am capable of doing. In addition to that making sure I have minimized my sensory loading by avoiding activities or environments which cause me neural fatigue.

Despite my careful planning I am learning to accept the unexpected.

Transplanted

This is my side of the fence

Not mine to choose

It might look bleak for a time

But it’s my side, it’s my place.

 

Patience and perseverance, slowly regaining a foothold

The bloom will reappear

The contrast can’t be missed

A splash of sunshine, lifting one’s spirit

 

Not meant to feed or graze

Just enjoy and gaze

Making it greener on my side

As my roots feed deeply.

Plan for Disaster…

I’ve endured five flights with smooth take offs and well executed landings while in ABI (acquired brain injury) mode. On flight number six I crashed. Don’t know what hit me. Take off didn’t go well and landing was a disaster.

I took my first  plane flight in ABI mode to the Caribbean a year ago. It was a test flight to see how I would fare. This was on recommendation of my OT (occupational therapist) who many times during my rehab would ask me, “Have you done …. since your accident?” If the answer was a no then we would outline the possible and probable challenges. With that information and likely projection we would work out a plan that would hopefully ensure a high degree of success.

I recently arrived back from a holiday in the Caribbean. The flight down (number 5 in ABI mode) was routine like the four before it. It had me wondering more than once why some much planning had gone into flight number 1.

Reflections of my most recent flight

Time and again I have been reminded to plan for the worst case scenario. Plan for the worst but hope for the best. When scheduling events and activities, my default mode should be to plan only the number of activities I can manage if all of them ended up in ‘worst case mode’.

As I reflect back on the most recent plane flight, planning for the worst has taken on a new dimension. The bus trip between the airport and the resort had taken longer than the previous time. Not much to do about that. With the recent rains many of the washouts had only been partly repaired making the trip much slower, longer and rougher than expected.

The initial arrival at the airport seemed to go fine. Once we had shed our checked luggage we prepared to go through customs. With the lineup being exceedingly slow, the stairway steep and the area hot and stuffy, I decided instead to go outside, get some fresh air and enjoy the quiet surroundings. (With only two international flights a week, the area outside the airport is a very calm place.)

After about 45 minutes I figured my traveling partner was near the front of the line, ready for customs inspections. I made my way back into the airport and excused myself as I pushed passed the waiting passengers. It was hard to do that unobtrusively as the waiting passengers tend to fill up the whole width of the stairway. Fortunately no one seemed visibly annoyed at having me weave past them. The visa procedure went off without a hitch. The customs inspection not so.

I was asked to remove my water bottle from my carry on luggage. I politely informed the inspector that I didn’t have a bottle. The second time I was ordered to open my luggage. Oops, there was the water bottle. Long forgotten. Fortunately there were no repercussions to my polite challenge.

After completing the customs inspection I was now confined to the hot, crowded and noisy waiting room on the second floor of the airport. The air conditioner was better at adding to the noise than at cooling the air. Waiting for 45 minutes in this space was too much for me. I was overwhelmed and went into sensory overload.

During the four hour plane flight I was alert and somewhat on edge. Unlike the previous five flights, I did not sleep one wink. By the time we landed I was overwhelmed and incapacitated due to a much more severe bout of sensory overload. I stayed in my seat for the next 20 minutes trying to pull myself together. Eventually, with the plane almost empty I felt compelled to exit. I didn’t want to have to deal with the extra attention that would accompany being helped off the plane.

The walk to the exit of the plane was slow and laboured, seeming to take forever. However, getting off the plane was minor compared to making my way to customs and the luggage retrieval area. My progress was slow and laboured as I shuffled along as best as I could manage.

I looked around for a courtesy shuttle but there were none in sight. The passengers who were being given wheel chair assistance seemed much more in need than me. And so, I continued to shuffle my way down the long corridors, thankful for a couple escalators and one moving sidewalk. While an escalator can be helpful, when I’m dealing with too much sensory loading, they can be tricky to get on and off since my balance and coordination are seriously compromised.

Reviewing my most recent flight

In working with an OT for the past 24 months, she has trained me to become my own detective. In looking back on the trip I have not been able to determine what factors caused my most recent flight to be so difficult. Also, I didn’t have the option to change my course of action during the 12 hours it took from leaving the resort by bus and arriving at home.

However, what I can change is to plan for a worst case scenario for my next flight. Having had five successful flights I figured I had seen the worst case, which was far from disastrous, while flying and have found it to be  very manageable. So, no additional thought or planning had been considered in my most recent flight.

The most recent trip made me realize that I need to find as many ways as possible to reduce my sensory loading. The less familiar the surroundings and procedures the harder it is to make contingency plans. At the same time, the less familiar the surrounds and the procedures, the greater the risk of experiencing sensory overload.

New travel plans to consider

To reduce my risk of sensory overload I will make plans that look like I’m being pampered with first class service. I need to request preferential treatment whenever possible. In going through the departure procedures, making arrangements for VIP privileges should help. (Maybe that’s why politicians look great after a long flight.) This could include a separate lounge, ostensibly with better air conditioning and hopefully much quieter.

I don’t plan to request preferential seating in the plane because I don’t know whether that would make any difference. Though requesting a window seat is less disruptive. That avoids having to deal with other passengers who might want to get in and out of their seat during the flight.

I would arrange for a courtesy shuttle if I’m in a large airport. That would limit the amount of walking as well as the distance I need to carry my luggage.

Misgivings

I’m not sure how convinced I am about requesting preferential treatment. I would feel odd getting special consideration if I don’t need it. Besides with the odds being that low, one in six, why make a fuss.

My daughter told me that such thinking is nonsense. Her advice is to plan for the VIP treatment and then just enjoy them, whether they are essential on that trip or not. Besides no one knows why I’m getting VIP treatment. For all they know, I’ve paid for it because I’m one of those hoity toity travelers that feels entitled to receiving first class treatment all the way

Really. Why should I care what others think. I just need to tell myself, “Don’t sweat the small stuff.” The goal is to arrive at my destination in fine form.

Moving Beyond Denial

A cherished gift from my niece

At Christmas time we pull names before getting together with extended family. The intent it to have each person buy a gift for one person. To make the occasion a bit more special, the ‘giver’ will include a personalized poem with the gift. While the ‘poem’ might not meet a minimal literary standard, it is much appreciated by the person receiving the gift.

I received a gift with a poem that left me feeling much appreciated. At the same time, it left me quite upset. I was surprised by my ambivalent response. It was like being torn, like being two different people.

The poem and the gift acknowledged my ABI (acquired brain injury) status. The injury puts me in the broader category of functioning as a neurologically atypical person. That in itself was nothing new.

I have been blogging for two years about the challenges of living with ABI and acknowledging my neuro-diverse (ND) status. However, when someone else puts it in writing, something in me changes.

So what changed? When I shared my experiences that match those of a neurologically atypical person, it’s like I only half believed it. The reason I only half believed it is because often as I go through a day or two and maybe even a week I might feel like my old self. I find myself functioning in a manner that does not remind me of my ABI. It’s kind of like being in denial.

When someone else mentions my neurological atypical functioning I hear something different. It challenges my denial. I makes it seem much more real. It makes my current status as ND seem inescapable. That’s the part that made the poem and gift upsetting.

What is heartwarming is that despite my ABI I am accepted and loved. Despite my limitations I am not forgotten or overlooked. The poem reminded me that I am in important part of my extended family.

The support, encouragement and understanding that I receive from within my family helps me look beyond the limitations I experience living with ABI.